In the Loop

News and views from across Mayo Clinic

September 6, 2018

Two Years After Double Lung Transplant, Steve Shank Is Grateful for Every Breath

By In the Loop

Steve and Caren Shank

Steve Shank and his wife will never forget the moment they learned Steve would be getting the transplant he needed to save his life. They’ll also never forget meeting the family of the donor who saved him.

On Saturday, Oct. 22, 2016, Steve and Caren Shank joined baseball fans around the country in watching the Chicago Cubs battle the Los Angeles Dodgers for the National League Championship and a trip to the World Series — the Cubs' first appearance since 1945. Among the sea of red, white and blue signs held by fans at Wrigley Field, one seemed to be meant especially for the Shanks. It read, "It Is Happening."

"Yes, Caren," Steve told his wife, "It is happening."

He wasn't talking about clinching a pennant. Steve and Caren were watching the game from his room in an intensive care unit at Mayo Clinic, where he was awaiting a lung transplant. Earlier that day, they'd learned that a set of lungs had become available. Now, as the couple waited for test results to confirm whether the lungs were a compatible match, the sign's message seemed rich with meaning. And shortly before midnight, the message proved true. A doctor stepped into the room with the life-changing news the Shanks been praying for: Steve would be getting new lungs the next day.

In the days since, Steve hasn't taken a single breath for granted. Neither has Caren, a sponsored projects specialist at Mayo Clinic. "It means the world to me that Steve got up this morning and took our kids to school," she tells us. "It is such a gift. He was incredibly lucky to have the outcome that he did."

Journey to transplant

Two years ago, that outcome was far from certain. As our friends over at Sharing Mayo Clinic reported, Steve's lung function had appeared normal for most of his life. But as he approached his 40th birthday, Steve began experiencing shortness of breath. Within months he was diagnosed with pulmonary fibrosis and began relying on oxygen tanks to breathe.

When the Shanks learned Steve's condition would require a lung transplant, "we were thrown out of our universe," Caren says. The couple had built a life they loved in Steve's hometown of Iowa City, Iowa. They'd put down roots in a great neighborhood and developed a strong network of friends. But they quickly made the decision to give all of that up. "I knew if anything ever happened to my family I would go to Mayo Clinic," Caren, a Rochester native, tells us. "Our entire focus was on keeping Steve alive." The couple put their house on the market and headed north.

Not long after arriving in Rochester, Steve was admitted to Mayo Clinic and placed on the transplant list. "Steve was declining really quickly, and everyone at Mayo was hustling to take care of him and get him listed for transplant," Caren says. "I was so proud of Mayo. I knew we were in the right place."

Giving back

At Mayo, genetic testing confirmed what the Shanks had come to suspect was causing Steve's lungs to fail. After Googling his symptoms, they'd learned about Hermansky-Pudlak syndrome, a rare condition that can cause albinism, vision problems, bleeding disorders and pulmonary fibrosis. Though Steve is legally blind, bruises easily and had been diagnosed with albinism at birth, he'd never been tested for the syndrome. The couple reached out to the Hermansky-Pudlak Syndrome Network, and they were directed to a group of researchers at the National Institutes of Health who are studying the condition. That group suspected Steve had Hermansky-Pudlak syndrome, but it would take a specific blood test — co-developed by Mayo Clinic pathologist Dong Chen, M.D., Ph.D. — to confirm the results.

Hermansky-Pudlak Syndrome is so rare that many doctors either aren't aware of it or rule it out without having their patients tested. The Shanks are trying to change that.

"We want to raise awareness," Caren says. "It's so important for doctors to know that if they meet a patient with albinism and nystagmus, they shouldn't rule out HPS. In my experience HPS isn't as rare as data suggests and commonly goes undiagnosed."

The couple also work to raise awareness about the importance of organ donation. They've appeared in ads for LifeSource, the nonprofit organization that facilitates organ, eye and tissue donation in the Upper Midwest. And they'll be the featured speakers at the 4th annual Gift of Life Transplant Gala of the Decades, a fundraiser for the Gift of Life Transplant House. The Shanks lived at the house for a month after Steve's transplant and credit the experience with helping them heal physically and emotionally. "The Gift of Life House really helps connect you to resources you need after you leave the hospital," Caren says. "It made such a difference for us."

Tommy's gift

But the real difference for Steve came from his donor, Tommy. "When we first heard there was a possible match for Steve, it was the best feeling," Caren says. "But then you immediately think of the donor family and their heartbreak."

After Steve's surgery, the couple struggled as they wrote a letter to the donor's family. "How do you thank someone for that?" Caren asks. "It's hard to find words." They hoped to someday meet the family and to find a way to convey their deep appreciation for the gift Steve had received.

"I'm working to be a good steward of Tommy's gift." — Steve Shank

They got a surprise opportunity to do just that at last year's Gift of Life gala, when organizers realized that both the Shanks and the donor's family were in attendance. "They asked if we'd like to meet the family, and if we'd like to meet them on stage," Caren says. The Shanks readily agreed, and later that night wrapped their arms around Tommy's mother and sister, locked in a silent, tearful group hug. "It was tough," Steve says. "There wasn't a lot of talking." The Shanks have stayed in touch with Tommy's family, joining forces to share his story and honor his memory.

"I'm working to be a good steward of Tommy's gift," Steve says.

Life after transplant

One way Steve had hoped to honor Tommy was by participating in the 2018 Transplant Games of America, which took place in Salt Lake City in August. He was scheduled to bike and bowl, but as KARE-11 TV reports, Steve was unable to attend the games after he developed an infection and was hospitalized just before the games began. That's all part of the new reality of post-transplant life, Caren says. "It's hard to be a transplant patient," she tells us. "Steve's immune system is suppressed. He takes 26 pills a day. We have to be so protective of him."

But the Shanks aren't complaining. Far from it. They know how lucky Steve was to receive Tommy's gift. And they know the post-transplant statistics. But they also believe in miracles, and in life beyond numbers.

"We're grateful for every day," Steve says. "Every day is a good day."

You can hear Steve and Caren share their story in this video or live at the 2018 Gift of Life Gala, which will take place Sept. 15 at the Black Box Theatre, part of Rochester Civic Theatre. And if you're not registered as an organ donor, take a minute to learn how you can give the gift of life. Then give us a gift by leaving a comment below. You can use the handy social media tools atop this page to share this story with others.



Tags: Albinism, Dr. Dong Chen, genetic testing, Hermansky-Pudlak syndrome, Lung Transplant, Patient Stories, Pulmonary fibrosis

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